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I'm Not Okay and It's Okay


It seems until recently, mental health has had a stigma associated with it. Did you know that – even now – more than half of those who have mental illness don’t receive help for their disorders? Often, people avoid or delay seeking treatment simply because of that stigma – and it is still very much a problem.


Because I am trying to be honest in this blog, I have to say that reading up on the history of mental health has intrigued me. Did you know the last lobotomy was performed in 1967? Think about that for a second … that was only 55 years ago! It’s fair to say that we didn’t know much about mental health back then. People either hid it if they could, were tossed away, or self-medicated.


Even now, only 8 percent of Baby Boomers have admitted to going to therapy, compared to the 26 percent of Generation X, 35 percent of Millennials and 37 percent of Generation Z! Gone are the days of just throwing everyone into a mental institution and calling it a day. It seems more and more people are actively trying to look out for their physical and mental health alike. While Baby Boomers whisper the word “therapy” like it’s blasphemy, the younger generations are becoming increasingly more comfortable with sharing their struggles with disorders such as anxiety, stress and depression.


The stigma associated with mental illness often comes from a lack of understanding or fear. A review of studies on stigma shows that while the public may accept the medical or genetic nature of a mental health disorder and the need for treatment, many people still have a negative view of those with mental illness.


But back to my story.


Life is tough and I’ll be honest, these days I could just sleep my life away (and practically did for the past three years). Think of your most stressed-out day at work and home. Customers are yelling at you, your boss is angry, you spilled coffee on your new shirt, and people are driving like idiots. Once you get home, you still have to cook, do laundry and clean. Now let’s add being a family caregiver into the mix. I get exhausted just thinking about all of this! The all-consuming stress of it is enough to make me want a to tear my hair out and put myself into a psych ward for a week just to get a break! According to a study conducted by Dr. Richard Schulz and Dr. Paula Sherwood, both from the University of Pittsburgh, caregiving “has all the features of a chronic stress experience.” It puts stress on us physically and mentally over time. The study also shows that 30-40 percent of those caring for someone with dementia suffer from depression and emotional stress, and there is a direct correlation between the level of depression you’re feeling and how your loved one is doing – for example, if they are an emotional basket case, incredibly agitated, in repetition mode, etc., this all impacts the caregiver in a very real way. Dementia patients also require more supervision, are more apt to be depressed themselves, and – let’s face it – are far less likely to say “thank you” or express any sort of gratitude for the things you do.


I know for myself, caring for someone with dementia has made my depression and anxiety worse. My patience is worn thin most days. I cry, lash out, want to sleep all the time, and my hair is falling out. My brain doesn’t seem to be working due to all the stress. I have even gotten in the shower and washed my hair TWICE because I was so distracted with my thoughts that I forgot I had already shampooed my hair. I know I neglect myself with the excuse that I must ensure my mom doesn’t need anything first. I always make sure she goes to the doctor, dentist, optometrist, etc., but do I go? Not normally, no.


Every day is different. Some days Mom wakes up in a great mood and I don’t. Sometimes it’s the other way around. The stress of not knowing what I’m walking in to gives me so much anxiety. I walk on eggshells every day. Will she be in a good mood? Will she be pushy? Will she be just beyond reasoning? I addressed caregiver respite in my last blog. That break from caregiving is a very big part of keeping yourself mentally healthy, but there are other things that may also help with the stress and anxiety of caregiving.


I have found that counseling is a helpful way to get things off your chest. Counselors are trained to listen and help you through the stressful times. They have heard it all and don’t judge. They know caregiver burnout is real and should be addressed. I have never felt comfortable sharing my problems with others – I am a helper and feel like I’m being a burden if I unload everything going on in my world, even to those closest to me. In my mind, they have just as much as I do on their plate … maybe even more. I’ll openly admit my perception may not actually be reality, but I’ve had this outlook my whole life. After much deliberation, I reluctantly decided to give counseling a try.


I was quiet the first session. It was – I’m sure – like pulling teeth to get me to talk. But then the counselor said something that finally clicked for me. She said, “Honey, this is my job; you aren’t bothering me. If I didn’t want to hear it, I wouldn’t have gotten my degree in it.” That changed my perspective. She is someone who cares about others and genuinely wants to help me get through the tough stages in life. She wouldn’t be a counselor if she didn’t! It was at that point that I began to open up more. I talked about my mom, my life before becoming a caregiver, and my life now as a caregiver.


There are a lot of emotions that go along with my current situation. Definitely a lot of tears. She continuously tells me to take time for myself. Just the thought of taking time for me makes me feel guilty. I have to tell myself it’s for my mental health so I do … ummm am … WILL … I promise! I won’t lie, it has been a very slow start in caring for myself. This past year living with Mom has taught me a great deal. I typically leave my counseling sessions feeling better and empowered. Going to therapy has taught me about love, understanding, respect and patience (or sometimes my lack thereof). I have had to go within myself and really change my outlook on life. I think I’ve become a bit more self-aware and not quite as anxiety-ridden now that I am focusing on myself WHILE taking care of Mom. I also know that going to counseling is a big deal, but I promise it is worth it.


And let me get these out of the way: It can be hard to get started; there are more important things you could be doing; it’s too expensive; you’re too tired. Believe me, I’ve had and said every excuse in the book. But there are resources out there that can help. If you are ready to start your journey into a healthier mental you, I have a couple of places you can start. UAMS offers six free counseling telehealth visits. You can use your computer, tablet or phone to sign up. This is funded by a grant, so anyone can sign up at no cost. After the six visits have been utilized, they will help you find a counselor and/or doctor to continue your journey. No more excuses! Visit www.faceyourfeelings.org to get started.


You can also visit www.nami.org. NAMI stands for the National Alliance on Mental Illness, and is the nation’s largest grassroots mental health organization that is dedicated to building better lives for the millions of Americans affected by mental illness. From education to helplines, NAMI is a valuable resource that many may not even know exists.

Another resource I found that has really helped me specifically is Alzheimer’s Arkansas. On their website, www.alzark.org, there is a list of meetings for caregivers and family of people with dementia and Alzheimer's. The meetings are typically once a month and are located throughout Arkansas. I can attest that being around others and sharing similar experiences helps with your new version of normal. No one’s journey is the same, but it feels good to know you’re not alone!


If you have any questions or need someone to talk to, I’m available to listen, too! As a Care Manager for Favor Home Care, we can work with you to get a break from caregiving, but we’re also here to be a resource. Anyone who answers can assist you, but if you want to speak with me directly, just ask for Candice. After all, we’re all on this crazy journey together … any way I can make yours easier, I want to use what I’m learning to help.


 

Candice Lewis is a Care Manager for Favor Home Care. She lives with her mom, Trish, who is battling early-onset dementia. She has a passion for helping others who are on the same journey as she and her mom. She finds comfort in the presence of animals and has a pig, three cats and a rabbit.

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